Hi, im new to this site, but was diagonsed with having sle ‘officially’ about 3 years ago, but have been suffering for a lot longer than that- as well as going for numerous tests over the years. I find it really difficult to understand lupus, and most of the time try and ignore it- although its fairly impossible to when your body aches, you feel tired, have random mood swings and generally feel pretty fed up about it. Symptom wise physically i mainly suffer with a really painful lower back- feeling as if i have a band of ‘swollen tissue’ accross my back. My wrists, knuckles and joints hurt, and my muscles seem quite tight and painful a lot of the time. Another physical symptom i have real problems with is lumps that come and go down the side of my neck. my neck hurts, and it feels as if there are two lobes at the back of my head that throb and become really sore even to touch…does anyone else share these really irritating things?
Emotionally i tend to be up and down, which again is really difficult to manage…apart from a healthy diet and excersice does anyone have any advice for this?
The antimalarial drug is wonderful. It has helped me more than anything else. Unfortunately you have to take drugs to have any quality of life with lupus. Try to get a muscle relaxer for your back and neck. This has also made my life easier. I resisted the nerve pill until I found myself screaming at people. Now I take one when needed. The neck wraps sold in drugstrores that you can put in the microwave will help your neck. Get it hot and let it cool. This will relax the muscle. Hope you feel better.
I also suffer from intense back pain and feel like I have bulges from the back muscles. My hands, upper body and neck are the worst. I was diagnosed 2 years ago but my dr. feels I’ve had lupus and three types of arthritis for several years. It’s a nightmare. I have nightmares, painful sleep. My neck stays swollen 5 out of 7 days. Now my ears and throat hurt most of the time. I have a lot of difficulty swallowing certain foods and have eliminated them from my diet. My fingers will swell so badly I drop things and can no longer wear anything with buttons. Lupus is a horrible disease and very depressing. I take plaquneal, cymbalta, xanax and fluid pills including powerful painkillers. Most days I have to force myself to move. I HATE LUPUS.
thanks for replying…although it is awful to hear how you are feeling, its also quite reassuring ! I have my next appointment with my consultant tomorrow, and up until now have been resisting the drugs that they want to give me…mainly the anti malarial one hydroxycloriquine…do you take this…and does it help ?
Hi vic, sorry to hear about your pain. It took me several years to be diagnosed as well! I have degenerated discs in my lower back that were eventually diagnosed through xrays and after i’d complained enough. It is probably unrelated to the SLE, but who knows? As for the bumps, i get the too - they are swollen lymph nodes. Sometimes mine become very swollen and they sure do hurt and are very tender. There is a huge concentration of lymph nodes in your head and neck - you can view a pic: click here . I wouldn’t be surprised if that’s what you’re feeling. I also take Plaquenil and it has helped my joint pain immensely, though it took at least six months to see a difference, as it is a slow working drug. But now, aside from flare ups, I can usually get up stairs w/ no problem and other daily tasks. Good luck to you. Is there a local LFA chapter that has support groups you can go to? You can do a search on lupus.org
You must be cuter hee hee!!!
Or as sweet as coton candy LOL!!
Hi all
I hope you dont mind me lurking.
Nanny Im happy you spoke of the muscle relaxants as I was wondering if I should ask my doc for any this week.
I am in so much pain and it isn’t getting any better. I have inflamation all over. I guess I can always ask. I wanted to jump in and say HI to everyone as well
Hi Wen - I take Zanaflex for spasms. My rhumey suggested these because I can break one in half and take during the day. He said when you’re in pain and get stressed, your muscles naturally tighten. Therefore, you hurt more. He is excellent and listens to his patients and never makes me feel stupid or a whiner. Since taking Zanaflex, I can really tell a difference. It’s getting hot down here and I’m in pain until I get used to the heat again. It’s a painful transisiton. I hope you get some relief.
Nanny, I also get terrible nightmares. In order to stop them, I take two 5ml of Valium. It seems to block all of my dreams and nightmares.
When my neck lymph nodes begin to swell, I know that I am going to get sick. It starting happening always to me even when I was a youngster. I take 500 mg of Keflex everytime that happens.
If your joints seem to hurt, write down on a piece of paper everything you eat and drink during the day. Stay away from those foods for that week. It could also be a preservative in the food.
Tomatoes are not supposed to be good. Sometimes I can eat them and sometimes not. <pizza, spaghetti>
Potatoes aren’t supposed to be good either. Sometimes I can eat them and other times no.
Wheat bothers me…and of course, a lot of different kinds of alcohol. These do NOT mix with the meds or the joints and muscles.
Did you know that Anna Nicole Smith is rumored to have had lupus? Yup. That would explain her weight gain and her behavior to her many medications mixed with any alcohol.
In a way, I hope they prove by a blood test, she did have this disease because this will surely influence the communities of medical researchers.
OT>>>>>>>>>>>>>>>>>>>>>>>
Why does everyone have a blue picture and I have a pink one?
Yes, I must be sweet as a cone filled with that puffy stuff one gets at a circus or fair! Cotton candy…
Oh, do you want me to throw some to you>?
I would love it but my diabetes wouldn’t hee hee!
See I told you I’m not sweet enough to be pink
Nanny,
This is what I feel you should do: Take ALL of your meds…even any vitamins and over the counter ones…and bring them to your pharmacist. You might be having an interaction drug problem. A pharmacist, in my opinion, knows more about the combination of the drugs than the docs.
If your ears and throat hurt, it could be you’re actually just sick…like normal sick. Did you go to the doctor for your throat and ears and have him/her check them out? I feel you should. There’s a lot of coughs going around and throat aches.
I know that when my throat hurts, that’s not the lupus. I am getting sick, and that’s when I take an antibiotic.
Am I the only one that suffers from fevers???
Hi Vic and everyone else on the board.
All of you are complaining of the same things as me. This site is awesome…
I went to my rheumatologist and told him I was okay…because other doctors have told me nothing was wrong. He is wonderful and I am going back to tell him the truth about how awful I feel. He did another ana that was positive and was supportive so I know I can talk to him.
Mel you are so funny. I want a pink picture too. I don’t get fevers, but that is one of the symptoms. It seems we all have the swollen gland thing in the neck. I have chronic sinusitis and was very sick with it about two weeks ago. But I knew I was sick…somehow I know when I’m sick or just have lupus symptoms.
Take Care All
Boomer
Hi all – this is such a wonderful site.!! I’m so glad to know I’m not a crazy bird. All of you have symptoms similar to mine. Of course, all of us have a little something different. People who are not lupies, look at us like we’re whiners and complainers. (worse yet - according to some non-lupies, we take way too many drugs)It’s so good to have people who understand. .
Yes us Lupies might appear to be a little loopy but were not REALLY 
Truthfully, most would agree I am a LITTLE more than luppy!
I had to go to my oncologist yesterday for an array of blood work. I asked him, since we have now had a "medical relationship" since 1994, if the lupus could be attacking the cancer cells in my bone marrow thus making them lower and then higher again; fighting any cancer.
He thought for a minute, and said, I don't know, but it could be possible."
I happen to be a very bad patient. He then asked me the following: Raise your hand if the answer is YES.
When was the last time you had a mammo done?
When did you see your gastro doc?
Your heart doctor? Your neurologist? Your Gyn? Your Rheum? Your therapist?
I didn't answer.
He said, "Raise you hand if you have seen anyone."
Me: I only see one "ist" and that's you!
Mel your a hoot :D
I hate going to the ists!!! I find it goes in cycles........... I have to see so many of those dreaded "ists" for a period of time and then I don't want to see or hear from one for as long as I can hold on. Seems as soon as yu need to see one , it opens the door to another bombardment of the "ists". ;s
LQQk at the board…I am now a member of the Wolf pack…I am BLUE too!
(Hmmm, in fact my fingers are now the same color) The weather here is
C O L D!
Oh my goodness you are BLUE!!!
Good thing your now a member of the pack…we were thinking of eating you hee hee hee!!!
Hey! Question on the joint pain…does it fluctuate or is it constant…or does this vary from spot to spot and person to person???